Natalie,* a home visiting nurse in a midwestern city, provides families with in-home support throughout pregnancy and a child’s early years. Natalie mostly serves urban American Indian families who, like all families, want what is best for their children. But accessing the care and support necessary to fully provide for their families can be difficult for urban American Indians, who still feel the legacy of the United States’ historic mistreatment of American Indian and Alaska Native (AI/AN) communities—genocide, forced migration, and cultural erasure.** Today, the AI/AN community feels this legacy most acutely in problems like high rates of poverty, housing challenges, job discrimination, and social isolation. Research shows that such stressors take a toll on pregnant women’s health and increases the risk of both maternal and infant mortality.

American Indian and Alaska Native adults are almost twice as likely as non-Hispanic white adults to experience psychological distress. Additionally, more than one in fourNative Americans live in poverty. So, although the mothers Natalie serves may know that prenatal care promotes safe and healthy pregnancies, few have a dependable car or the gas money needed to get regular care. Many want to work or attend school to provide a better future for their families, but virtually none have access to necessary child care. And Natalie knows that, as urban American Indians, even the most resilient parents can struggle with feeling “invisible.”

There is growing awareness that women of color—particularly African American women—bear the additional burden of institutional racism, which negatively affects their wellbeing even when they enjoy protective factors like high income. Although there is little research or media attention on American Indian and Alaska Native maternal and infant health, evidence suggests parallels to African American women’s experiences.

In a geographically diverse sample of urban areas, for example, American Indian and Alaska Native mothers were 4.5 times more likely to die from pregnancy and childbirth related causes than non-Hispanic white mothers. Nationwide, American Indian and Alaska Native infants are nearly twice as likely to die by their first birthday as non-Hispanic white infants, with the most common causes being congenital malformations, sudden infant death syndrome (SIDS), and prematurity. More worrying still, the American Indian and Alaska Native infant mortality rate remains unrelentingly high; between 2005 and 2014, it was the only racial or ethnic group that did not experience a decline in infant mortality. These trends illuminate the need for greater understanding of the problem as well as the development of culturally appropriate solutions.

Data challenges make progress difficult

American Indians and Alaska Natives—who make up approximately 2 percent of the United States’ population—are often overlooked in public health research for two reasons. First, because of their small sample size in statistical terms, American Indians are often dropped from national reports and/or not included in analyses.

Second, American Indian and Alaska Natives’ medical records and birth and death certificates are plagued by racial misreporting and racial misclassification. For example, the Centers for Disease Control and Prevention’s (CDC) standard practice is to only consider maternal race when assigning infants’ race, thereby excluding infants with American Indian or Alaska Native fathers from birth counts. Moreover, physicians and coroners are often the reporters of racial identity on official death certificates, and frequently report American Indian people as white, despite guidelines to confirm the person’s self-identification through an informant such as a family member. As a result, American Indian and Alaska Native infant and maternal mortality is undercounted and underestimated. Smaller numbers also decrease the reliability of officially calculated rates. Statistically, the smaller a population, the more individual events are needed to calculate a reliable rate.

Relatively small population size and racial misclassification make research and accurate data collection difficult for the American Indian and Alaska Native community. This perhaps helps explains why there is relatively little research on what social factors contribute to poor delivery and birth outcomes for American Indian and Alaska Native women. Most research that does exist focuses on the role of health care, including access to affordable, high-quality, sensitive care.

Barriers to health care put the American Indian and Alaska Native population at risk

American Indian and Alaska Native mothers face numerous barriers to adequate health care. First, compared to the non-Hispanic white population, American Indian and Alaska Natives are more than twice as likely to lack medical insurance, meaning they may struggle to pay for—or even access—necessary services. Indeed, in a nationally representative sample, nearly half of Native Americans were so concerned about costs that they avoided seeking medical attention.

Second, Indian Health Services (IHS)—a federal agency responsible for providing health services to American Indian and Alaska Natives—is chronically underfunded and facilities often lack services such as emergency departments. Pediatricians make up only 8 percent of IHS providers and patients experience longer wait times than non-IHS programs for their appointments. As one mother explained, “My first doctor for my first baby … was not helpful. She was always impatient … I had to hurry up and get my questions out before she’d run out of the room. I got all my information in the waiting room from the parents’ magazines.” That same mother also reported that, when she was pregnant, her doctor once left her sitting in the waiting room for three hours.

Finally, American Indian and Alaska Native families fortunate enough to have insurance and access to medical care still face discrimination in the health care system. In a recent NPR story, Margaret Moss—a member of the Hidatsa tribe and professor of nursing at the University of Buffalo—described taking her son to get care for a broken arm. The doctor did not correctly set her son’s arm, and Moss remembered that the doctor dismissed her requests that he reexamine her son’s arm. “Even when I, as an educated person using the right words, was saying what needed to happen, [he] didn’t want to do anything for us, even though we had a [health insurance] card.”

Moss is not alone. In one study, approximately one-quarter of Native Americans reported experiencing racial discrimination when visiting a doctor or health clinic. These experiences are so damaging that 15 percent of respondents in the study shared that they have avoided visiting a doctor for fear of discrimination. Given these challenges, it is not surprising that American Indian and Alaska Native mothers are 2.5 times more likely to receive late or no prenatal care than non-Hispanic white mothers.

Promising practices to improve maternal and infant health

Many organizations are implementing programs to address high maternal and infant mortality, beginning with efforts to collect accurate data and conduct in-depth needs assessments. For example, the Urban Indian Health Institute is a tribal epidemiology center that conducts research on topics like community health and parenting.

Community programs also provide direct services. Although these programs take different approaches, they share a community-based orientation rooted in culture. As one program leader points out: “The idea of a community coming together to support a woman and her family during pregnancy, after pregnancy, as the child develops—this is a traditional concept.”

The Native Healthy Start/Family Spirit program of American Indian Health and Family Services of Southeastern Michigan, for example, provides support to families during and after pregnancy. Family Sprit is an evidence-based, culturally tailored home visiting program developed by the Johns Hopkins Center for American Indian Health that is shown to improve maternal depression, an important correlate of both maternal and infant mortality. In addition to Family Spirit, the organization uses a second home visiting curriculum rooted in local community practices that was developed by the Inter-Tribal Council of Michigan. These programs include transportation services to medical appointments, community health events, and maternal depression screenings. Each of these components celebrates families’ unique strengths, recognizes the importance of Native traditions, and helps families to incorporate cultural elements into today’s health care system.

Similarly, California’s American Indian Infant Health Initiative (AIIHI) integrates health and social services for women and infants from the earliest days of a woman’s pregnancy through the child’s first five years. Participants in the AIIHI program receive in-home visits from dedicated American Indian paraprofessionals or public health nurses. Program leaders describe these providers as a combination of home visitor, community health worker, and doula or birth coach: they help women develop and advocate for birth plans that reflect their personal, cultural, and spiritual needs; teach families about healthy, culturally-grounded child development; help families apply for medical insurance; and connect them to nutritional programs like Women, Infants, and Children (WIC) and the Supplemental Nutrition Assistance Program (SNAP), known in California as CalFresh.

Conclusion

The racial disparity in maternal and infant mortality between American Indian and non-Hispanic white communities is a problem that has only grown in recent years. Data challenges related to racial misclassification suggest that the problem is sadly even more grave than it appears. Fortunately, Congress is taking action by appropriating new funding for programs and passing a bill through committee to help states and tribal organizations collect accurate data on maternal mortality. Moreover, programs like Native Healthy Start/Family Spirit and the AIIHI have a history of addressing the maternal and infant health needs of American Indian and Alaska Native families, recognizing families’ resilience in the face of adversity. Home visiting nurses, like Natalie, already play a significant role in American Indian and Alaska Native communities. “No matter who our families are,” Natalie said, “We always come from a place of recognizing their strengths.” Lessons from existing programs should be used to approach this problem for the benefit of American Indian and Alaska Native families.

*Authors’ note: This home visiting nurse’s name has been changed to protect her identity.

** Authors’ note: Throughout this column, the authors use the demographic terminology used in the source material. Most often, sources used the term “American Indian or Alaska Native,” following language used by the U.S. Census. This column uses the terms “Native American,” “American Indian and Alaska Native,” and “Native” interchangeably. The authors note that Native communities have different preferences regarding terminology, although tribal affiliation should be used wherever possible.

Lucy Truschel is an intern for Early Childhood Policy at the Center for American Progress. Cristina Novoa is a policy analyst for Early Childhood Policy at the Center for American Progress.